I feel for you so much, we seem to be traveling down the same terrible path together. Sending you love and hugs to get you through. Please please contact me if there is anything I can do to help or if you just need to vent to someone who is living this awful nightmare right alongside you Jan ... View more

I got out of the house today, everyone said I needed to, and I know it's true but I, in my infinite stupidity, chose to go to a shopping centre that John and I frequented. So many memories and there was Christmas stuff everywhere! I just wanted to shout at everyone "how dare you be happy and go about your Christmas shopping while my husband lays dying???" He is slipping further and further from me....hardly ever awake, refusing food, pills.... I told Palliative Care the other day on one if their 'visits' that he was having trouble urinating. He really needs to go but has trouble getting it started. I stand with bottle in place for up to an hour their solution? Tell him to pee in his incontinence pad! Well today he hasn't been able to go since 9 am and it's now 7:30 pm. If he was able to go in his pad he would do it in his sleep wouldn't he? Palliative Care in this area need to rename themselves 'Palliative I-don't-give-a-damn'! They have repeatedly told me I should put him in a hospice but I know he wants to pass at home! Apparently if you wish to care for your loved ones at home during their transition from this life then you can bloody well do it without help. Equipment they arranged, hospital bed, lifter (which is very heavy to use) etc... After that? Nothing! Okay rant over, feel a little better (not really)....thanks for listening folks 🙂 ... View more

The most loving gift we can offer, I feel, is letting our loved ones go when there is no hope, only pain and confusion. ... View more

Thanks Tamara, right back at ya xx ... View more

One day at a time yes, but those days are so long and I am so tired! I hear you, I too just wish, for his sake mostly, that it was over. If there was hope I might keep my darling I would do anything, fight for however long I had to but that is not to be, so let his suffering, and mine, come to an end. ... View more

Hi Geoff, no haven't got out yet, something always seems to get in the way of my plans. I am DEFINITELY going to get out this Saturday morning. I have to! I am going to take myself to a little cafe and have lunch overlooking the lake. I love water, I find it soothing to the soul. My daughter will handle anything that comes up here, including any anxiety, although that seems to have given way to a more of a feeling of peace for him. I tell myself that it is not my darling that behaves strangely, it is the tumour ! It helps to deal with things doesn't it. I miss John already, he's still here and he seems comforted by my touch but I miss the comfort being a two way street. Sending you hugs and all my support as you work through your grief. Be kind to yourself, you took good care of Lorraine, now takevcarevof yourself. Jan ... View more

Dear Wynette I totally empathise with you. It's not only those with the GBM that suffer emotionally. I know that I am so up and down myself that sometimes I feel like I have multiple personalities. Today I was so depressed right from the time I awoke, didn't want to face the day and what it might bring. That is usual for me to wake dreading the day but I usually shake it off and get on with things. Not today, it just clung to me lke a dark cloud over my head. It wasn't until tonight that I looked at my darling laying there so helpless and I broke down, sobbed my heart out with my head on his chest. I'm not usually much of a crier and I think that is part of the problem, I don't release pent up emotions and stress. Well after my cry I felt the depression lift a little. God I miss being able to cuddle up with John, I miss him as my husband, my lover and my best friend! I can't tell you why so much pain and heartache, nature of this damn beast I guess? Yes GBM sux! Hugs, Jan ... View more

Hi Geoff, Glad you are getting to spend some time with Lorraine's family and to 'wander through' her memories of NZ and the elephant turds. I hope it helps ease the pain you feel at not having her with you. John is deteriorating day by day. Hard to sit and watch as his 'essence' leaves and he becomes more and more inaccessible to me. No conversations like we used to have, no conversations at all. A once vibrant, loving man with a wicked sense of humour, now nothing more than a shell of who he was, breaks my heart to have to just sit by and watch it happen. Feels in many ways as if I've already lost him. ... View more

I'm coping, tx Geoff. Was supposed to get out for a walk today while some friends sat with John but just as I was supposed to leave he experienced acute anxiety so I had to give him medication and sit with him while it calmed him down, maybe another day eh? Talked to the community nurse this morning about what pal care said yesterday and she assured me "months" was definitely not what he has left, that if he was still here in a months time she would be very surprised, in fact, a couple of weeks would be more accurate. I tend to believe her as she sees the decline from day to day. How are you traveling Geoff? ... View more